The caregivers’ perspectives of burden before and after an internet-based intervention of young persons with ADHD or autism spectrum disorder

References

• APA. Diagnostic and statistical manual of mental disorders (DSM-5). 5th ed. Washington (DC): American Psychiatric Press; 2013.
   Google Scholar
• Faraone SV, Asherson P, Banaschewski T, et al. Attention-deficit/hyperactivity disorder. Nat Rev Dis Primers. 2015;1:15020.
   PubMed Web of Science ®Google Scholar
• Karst JS, Van Hecke AV. Parent and family impact of autism spectrum disorders: a review and proposed model for intervention evaluation. Clin Child Fam Psychol Rev. 2012;15:247–277.
   PubMed Web of Science ®Google Scholar
• Law M. Participation in the occupations of everyday life. Am J Occup Ther. 2002;56:640–649.
   PubMed Web of Science ®Google Scholar
• Hartley SL, Barker ET, Seltzer MM, et al. The relative risk and timing of divorce in families of children with an autism spectrum disorder. J Fam Psychol. 2010;24:449–457.
   PubMed Web of Science ®Google Scholar
• Weitlauf AS, Vehorn AC, Taylor JL, et al. Relationship satisfaction, parenting stress, and depression in mothers of children with autism. Autism. 2014;18:194–198.
   PubMed Web of Science ®Google Scholar
• Stahlberg O, Soderstrom H, Rastam M, et al. Bipolar disorder, schizophrenia, and other psychotic disorders in adults with childhood onset AD/HD and/or autism spectrum disorders. J Neural Transm (Vienna). 2004;111:891–902.
   PubMed Web of Science ®Google Scholar
• Donovan AM. Family stress and ways of coping with adolescents who have handicaps: maternal perceptions. Am J Ment Retard. 1988;92:502–509.
   PubMedGoogle Scholar
• Mao AR. Factors that contribute to caregiver burden for parents of children with autism spectrum disorder or attention-deficit/hyperactivity disorder. J Am Acad Child Adolesc Psychiatry. 2012;51:864–866.
   PubMed Web of Science ®Google Scholar
• Cadman T, Eklund H, Howley D, et al. Caregiver burden as people with autism spectrum disorder and attention-deficit/hyperactivity disorder transition into adolescence and adulthood in the United Kingdom. J Am Acad Child Adolesc Psychiatry. 2012;51:879–888.
   PubMed Web of Science ®Google Scholar
• Arnett JJ. Emerging adulthood. A theory of development from the late teens through the twenties. Am Psychol. 2000;55:469–480.
   PubMed Web of Science ®Google Scholar
• Frazier TW, Youngstrom EA, Glutting JJ, et al. ADHD and achievement: meta-analysis of the child, adolescent, and adult literatures and a concomitant study with college students. J Learn Disabil. 2007;40:49–65.
   PubMed Web of Science ®Google Scholar
• Weyandt LL. Executive function in children, adolescents, and adults with attention deficit hyperactivity disorder: introduction to the special issue. Dev Neuropsychol. 2005;27:1–10.
   PubMed Web of Science ®Google Scholar
• Reaven JA. Children with high-functioning autism spectrum disorders and co-occurring anxiety symptoms: implications for assessment and treatment. J Spec Pediatr Nurs. 2009;14:192–199.
   PubMed Web of Science ®Google Scholar
• Dunn W, Brown C, McGuigan A. The ecology of human performance: a framework for considering the effect of context. Am J Occup Ther. 1994;48:595–607.
   PubMed Web of Science ®Google Scholar
• Wilcock AA. An occupational perspective of health. Thorofare: Slack Incorporated; 1998.
   Google Scholar
• Kielhofner G. A model of human occupation: theory and application. 4th ed. Baltimore: Lippincott, Williams & Wilkins; 2008.
   Google Scholar
• Strong S, Rigby P, Stewart D, et al. Application of the Person-environment-occupation model: a practical tool. Can J Occup Ther. 1999;66:122–133.
   PubMedGoogle Scholar
• Attwood T. The complete guide to Asperger's syndrome. Great Britain: Jessica Kingsley Publishers; 2007.
   Google Scholar
• Usami M. Functional consequences of ADHD on children and their families. Psychiatry Clin Neurosci. 2016;70:303–317.
   PubMed Web of Science ®Google Scholar
• Larsen FW, Mouridsen SE. The outcome in children with childhood autism and Asperger syndrome originally diagnosed as psychotic. A 30-year follow-up study of subjects hospitalized as children. Eur Child Adolesc Psychiatry. 1997;6:181–190.
   PubMed Web of Science ®Google Scholar
• King S, Teplicky R, King G, et al. Family-centered service for children with cerebral palsy and their families: a review of the literature. Semin Pediatr Neurol. 2004;11:78–86.
   PubMedGoogle Scholar
• Ahlstrom BH, Skarsater I, Danielson E. Living with major depression: experiences from families' perspectives. Scand J Caring Sci. 2009;23:309–316.
   PubMed Web of Science ®Google Scholar
• Grant AM. The impact of life coaching on goal attainment, metacognition and mental health. Social Behav Personal. 2003;31:253–264.
   Web of Science ®Google Scholar
• Green L, Oades L, Grant A. Cognitive-behavioral, solution-focused life coaching: Enhancing goal striving, well-being, and hope. J Pos Psych. 2006;1:142–149.
   Google Scholar
• Sleeper-Triplett J. The effectiveness of coaching for children and teens with AD/HD. Pediatr Nurs. 2008;34:433–435.
   PubMedGoogle Scholar
• Wentz E, Nyden A, Krevers B. Development of an internet-based support and coaching model for adolescents and young adults with ADHD and autism spectrum disorders: a pilot study. Eur Child Adolesc Psychiatry. 2012;21:611–622.
   PubMed Web of Science ®Google Scholar
• Yin R. Case Study: Design and Methods. London: Sage Publications; 2009.
   Google Scholar
• Baxter J, Jack S. Qualitative case study methodology: study design and implementation for novice researcher. The Qual Rep. 2008;13:544–559.
   Google Scholar
• Salminen A-L, Harra T, Lautamo T. Conducting case study research in occupational therapy. Aust Occ Ther J. 2006;53:3–8.
   Google Scholar
• Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24:105–112.
   PubMed Web of Science ®Google Scholar
• APA. Diagnostic and statistical manual of mental disorders (DSM-IV). 4th ed. Washington (DC): American Psychiatric Press; 1994.
   Google Scholar
• Schene AH, van Wijngaarden B. The involvement evaluation questionnaire. Amsterdam, The Netherlands: Department of Psychiatry; University of Amsterdam; 1992.
   Google Scholar
• World Medical Association Declaration of Helsinki; 2008.
   Google Scholar
• Lowing K, Bexelius A, Brogren Carlberg E. Activity focused and goal directed therapy for children with cerebral palsy-do goals make a difference? Disabil Rehabil. 2009;31:1808–1816.
   PubMed Web of Science ®Google Scholar
• Rodger S, Brandenburg J. Cognitive Orientation to (daily) Occupational Performance (CO-OP) with children with Asperger’s syndrome who have motor-based occupational performance goals. Aust Occup Ther J. 2009;56:41–50.
   PubMed Web of Science ®Google Scholar
• Andersson G, Cuijpers P. Pros and cons of online cognitive-behavioural therapy. Br J Psychiatry. 2008;193:270–271.
   PubMed Web of Science ®Google Scholar
• Hjarthag F, Helldin L, Olsson AK, et al. Family burden and functional assessment in the Swedish CLIPS-study: do staff and relatives agree on individuals with psychotic disorders' functional status? Soc Psychiatry Psychiatr Epidemiol. 2012;47:581–587.
   PubMed Web of Science ®Google Scholar
• Larson E. Ever vigilant: maternal support of participation in daily life for boys with autism. Phys Occup Ther Pediatr. 2010;30:16–27.
   PubMed Web of Science ®Google Scholar
• Ek A, Isaksson G. How adults with ADHD get engaged in and perform everyday activities. Scand J Occup Ther. 2013;20:282–291.
   PubMed Web of Science ®Google Scholar
• Wolf LC, Noh S, Fisman SN, et al. Psychological effects of parenting stress on parents of autistic children. J Autism Dev Disord. 1989;19:157–166.
   PubMed Web of Science ®Google Scholar
• Abelenda J, Helfrich CA. Family resilience and mental illness: the role of occupational therapy. Occup Ther Mental Health. 2003;19:25–39.
   Google Scholar
• Rasmussen P, Gillberg C. Natural outcome of ADHD with developmental coordination disorder at age 22 years: a controlled, longitudinal, community-based study. J Am Acad Child Adolesc Psychiatry. 2000;39:1424–1431.
   PubMed Web of Science ®Google Scholar
• Howlin P. Outcome in adult life for more able individuals with Autism or Asperger syndrome. Autism. 2000;4:63–83.
   Google Scholar
• Howlin P, Goode S, Hutton J, et al. Adult outcome for children with autism. J Child Psychol Psychiatry. 2004;45:212–229.
   PubMed Web of Science ®Google Scholar
• Levine M. Ready or not, here life comes. New York: Simon & Schuster; 2005.
   Google Scholar
• Ahlstrom BH. Difficulties in everyday life: Young persons’ with ADHD and autism spectrum disorders perspectives. A chat-log analysis. Int J Qual Stud Health Well-being. 2014;9:23376.
   PubMed Web of Science ®Google Scholar
• Mesibov GB, Shea V. Evidence-based practices and autism. Autism. 2011;15:114–133.
   PubMed Web of Science ®Google Scholar